Wednesday, August 14, 2013

But I did wear out several pairs of earplugs

We spent this past September through June in toddler-sickness purgatory (so much cough-puking. I now catch vomit in my hands without thinking twice about it) (GROSS). And at Ambrose's and Linus's two-year checkup I was relieved when their pediatrician gave us a referral to an ENT after being shocked by the size of our little guys' tonsils, because it had been bugging me. Something was wrong with them. Kids are not supposed to throw up every time they have a cough, and they're not supposed to breathe like Darth Vader.

The ENT heard them breathe and looked in their throats and told us we could skip the (normally requisite) sleep study if we wanted, because there was no way tonsils that size weren't causing sleep apnea. We scheduled the surgery while we were in the office that day. July 31st.

Five weeks and a fair amount of anxiety on my part later, surgery day came. I'd forbidden myself to dwell on any of the anomalous possible complications, but kid health stuff is my anxiety trigger, and I struggled in advance of the surgery. I was vibrating with nerves in the OR waiting room. My now-stomach hurts in sympathy with my then-stomach, remembering how it felt that morning.

Pretty soon we went back to the pre-op area and went through all the pre-op rigamarole, including the inevitable part where our surgery times got pushed back and back. They'd told us to give the twins no food after midnight and no water after 9am, and it was 1:30pm by the time Ambrose finally got called back to the OR. Linus waited another hour and a half after that, and amazed us with his good mood; I couldn't believe the way he was bopping around considering he'd had no food for eighteen hours and no water for six.

(enjoying the playroom in the pre-op area, which was very nicely equipped)

Anyway, the moment I was most worried about was immediately before surgery, as we'd been told that the babies would get Versed and then be taken back to the OR alone. I hated the idea of them going to sleep, afraid, without us there. But it turned out the anesthesiology team that day was okay with us going into the OR and staying until our kids were under, so that's what we did. (They also don't like to give Versed before tonsillectomies, so it was good that we did it this way, because L & A were wide awake.)

I took Ambrose back, and he hates all things medical, so he sobbed the entire walk down the hallway and into the operating room, at which point he started wailing. He was so mad, but they let me hold him the entire time. I was impressed at the way the team (an attending anesthesiologist, a resident, a nurse anesthetist, and a couple nurses, I think) surrounded me and let me stay there, right in there, while they put my baby to sleep. I would've been heartbroken to watch him get wheeled away in hysterics (and he would've been hysterical) and instead I got to be there. I was so grateful for that.

Bryan is Linus's preferred parent, so he was the one who took him to the OR, but apparently Linus was pretty chill and cooperative. Tough little guy!

The surgeries, blessedly, went as well as they could have. My anxiety lifted some after the doctor came out to tell us that Ambrose's had gone well, and even more once Linus was done.

Anxiety aside, though, my low point was when we got called back to recovery to see Ambrose as he was waking up. He'd been sleeping off the anesthesia for an hour, but now he was half-awake and whimpering, drowsy from a hit of morphine and disoriented. We'd agreed to have the surgeon place a nasogastric feeding tube during surgery in case - as is apparently common with kids their age - they refused to drink or eat afterward, but that turned out to be a mistake, as the feeding tubes made them miserable. (Fortunately it was an easily fixable mistake, and their nurse up where we spent the night removed the tubes almost immediately.) In recovery, Ambrose was outraged about his tube and about the "no-nos" they'd put on his arms to keep him from pulling it and the IV out, and I couldn't pick him up. Seeing your baby in pain and being unable to fix it is just brutal. Yeah, I cried.

We were supposed to go to Moderate Care after surgery, but it was full, so instead of bumping us down to General Care they bumped us up to Intensive Care, and we spent the night in the PICU. I think it turned out to be serendipitous overall, because the hospital has private rooms so we'd have been in separate ones, but the PICU only had space for us in a couple of bays, so they gave us two next to each other and we spent the night all together. Plus ICU nurses are impressively competent and do not get ruffled. (I very much liked the nurses on the general care floor when we spent 10 nights at this hospital with newborn Blaise when he had RSV, but whoa. ICU nurses get. stuff. done.)

We f0llowed Ambrose's stretcher upstairs and the nurse won my immediate allegiance by helping me get my baby into my arms moments after we arrived. ("Can I hold him?" "Of course!" and then she was moving furniture and cords, and he was on my lap, quieting, sinking in contently, and I could breathe again.) A PICU resident came and chatted with me and answered questions, and an attending breezed with a smile to tell me, "This is the healthiest kid I've seen come out of surgery in twenty years!" Since I'd been dismayed to see how sad and sick Ambrose seemed, that was comforting to hear.

(That was also the most we saw of the attending physicians during our stay, which I guess shows we really didn't need to be in ICU.)

Bryan went down to recovery to get Linus, and soon we were all settled in two recliners. We'd asked for beds and the nurse manager had insisted we try cribs first for liability reasons. I assured him they'd refuse to sleep in them and I was right, but maybe they'd have refused beds too. Anyway, the twins slept fairly deeply that night and Bryan and I slept barely at all, but we'd expected that.

My favorite person during our stay was the ENT resident who'd assisted with our surgeries. He showed up twice that evening and three times the next day, always with a smile and some encouragement for us. I'd been unprepared for how pathetic Ambrose and Linus would be after their operations, and he kept reassuring me that they were doing fine, even great, and that everything we were seeing was normal. It helped.

(our poor sad sleepy babies that night, blurry because it was dark)

The hardest part for me was that they needed respiratory support, due to all the gunk left over from surgery clogging their airways . I had not known this was a possibility. It wasn't a big deal but it FELT like one to me. Aside from NICU our child hospitalizations have been because of respiratory illness (RSV-bronchiolitis for Blaise, RSV-pneumonia for Linus) and I've spent nineteen long dreary days of my life fixating on those damn pulse oximeter numbers.

(Pulse ox, for those of you lucky enough not to know, measures oxygen saturation in the blood. People in respiratory distress often have unsatisfactory numbers - generally below 90-ish percent - and need respiratory help.)

Ambrose and Linus, as the surgeon kept telling me, were doing fine, and Ambrose - who'd awoken for a while and done some good coughing - made it through the night with only "blow-by" oxygen, which came out of a tube I held near his face whenever his sats started to drop during deep sleep. Linus, however, went right from anesthesia stupor into nighttime sleeping without clearing his throat, so he was not breathing well. We had to put him on a nasal cannula (see here) and oh, wow, I wasn't expecting that to be so much of a trigger for me. Every time either twin's O2 saturation number dropped below 90 and the alarm went off, my stomach clenched. It was a very clenchy night.

We spent the the night drifting in and out of very short naps in the chairs as we tried to keep our guys comfortable, plyed them with juice boxes, cheered when they each had a wet diaper, gave doses of pain reliever, and listened to those stupid alarms ding endlessly. When the sun rose we were groggy and not even a little bit ready to face a new day.

Our doctor (the ENT resident was basically in charge of everything related to our care) had told us we'd need Ambrose and Linus to be drinking fluids, not having any bleeding, and not needing oxygen in order to go home. They were drinking very well (and later that morning, eating yogurt) but the oxygen thing was worrying me. I'd only ever had kids with respiratory illness on oxygen, and a sick kid needing as much as A & L needed that night would definitely not be rebounding off the O2 the next day. But because their lungs were healthy and they just needed to cough some stuff out of their throats, the doctor was confident we'd still make it home that day.

He stopped by at the crack of dawn to tell us that, then again a few hours later to discharge Ambrose, who had indeed rallied and was holding his numbers just fine with no oxygen. And amazingly enough, six hours later Linus had been up, done some good coughing, and made it through a nap without needing oxygen, so he was discharged too. We all went home around 5pm that day.

Thursday was a very up-and-down day for me.

I was grateful the surgery had gone well and that our twins seemed to be on the road to recovering. Apparently many children their age will refuse to eat or drink at all after surgery, and they both drank multiple juice boxes and ate several ounces of yogurt in the first 24 hours. The medical staff were pleased, so I was too.

But it was so, so not fun seeing my babies in such pain. I'd been warned it would be rough, but knowing it's coming doesn't make it easy. Add in the oxygen thing, and a night of no sleep, and a day of wondering if we'd actually get to take both kids home that day... I was emotionally exhausted by the time we walked out the door.

Also, being in the PICU complicated things. On one hand, perspective can help, and when you're in the middle of a pediatric intensive care unit, it's impossible to convince yourself your kid is in bad shape just because he needs - horror of horrors! - some oxygen by nasal cannula. Being in ICU helped keep me from going into a pity spiral, and it gave me something to concentrate on (praying for the other families there) during the rough moments of the night. On the other hand, I was at the end of my emotional rope, and I wanted to sob in sympathy for every parent I saw in the hallway. I used the bathroom in the family lounge, and seeing the lockers, the sleeping bags, the people who'd been there for who knows how long worrying about children in who knows what condition... I felt so sad for them that I was choking back tears for an hour.

I fortunately managed to resist throwing myself into a game of Reverse Pain Olympics and I held it together for my little guys, but by the time we walked out out the door I could barely put one foot in front of the other. Physically and emotionally I was tapped out.

But hey! Then! Then we got to come home and dive into recovery, a haze from which we would not emerge for eight full days.

We were lucky because not only did Ambrose and Linus not have a hint of bleeding, but they also were troopers about drinking, which meant we had no dehydration worries. But oh my gosh. The screaming. The endless crying, and both clinging to me all day long, and waking at night and screaming, and refusing to eat and screaming, and screaming wailing crying did I mention screaming?

It's terrible to see your babies in pain, especially moderately severe pain that they don't understand (and probably think will be with them forever). Two of them at once was a special kind of terrible. They were so pathetic and so loud, and while Bryan was working there was often no way to keep them both happy at once.

(this is roughly what we looked like for a full week. Ambrose is facing the camera)

On day nine post-surgery both Linus and Ambrose finally seemed to feel better, as evidenced by their renewed willingness to climb the furniture and throw things down the stairs. Fussiness and clinginess gradually decreased. I could hear myself think again.

Of course, the big question is whether the surgery was worth it. Blessedly I think we already have our answer. Even right after surgery when Bryan and I were holding the babies as they slept, we were like, "Something seems weird here. Oh. Whoa! We can't hear them breathing!" The Darth Vader aspect to their respiration had disappeared. Presumably whatever sleep apnea they were having has disappeared with it.

And! And! Although they each threw up once coming off the anesthesia, that was it. They had to cough a lot of stuff out of their throats during the first few days and much of the coughing was violent enough that I grabbed for a towel or a bowl, confident that vomiting would ensue... and then it didn't. Amazing. I've been actually amazed. (Am wondering if their huge tonsils were triggering their gag reflexes or something?) Even if the lack of vomiting were the only benefit of surgery, it would almost be worth it.

Anyway, the whole ordeal was rough both physically and mentally, but we made it! And we were very fortunate that things went so well medically for Ambrose and Linus. Thank God it went well, and thank God it's over.

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Oh, I think it is cruel to schedule kid surgeries so late. Ours was scheduled for 7 a.m. Which meant we were up at the crack of dawn, but it also meant that even with delays, we were in surgery before she even realized she was overly hungry/thirsty.

Recovery is just hard. I remember thinking, "This is the stupidest thing we've ever done." We were dealing with a child in pain for days...so much whining and crying. But then, like magic, it just got better one day (day 11 for us) and then we had that moment where we realized that we could no longer hear her breathing/snoring from across the house, and we knew it was important. The number of colds and sinus infections and nighttime wake-ups over the past 1.5 years since surgery have been SIGNIFICANTLY decreased. I hope you enjoy this winter, which is bound to be easier for you than last!!

I hope they continue to improve and the surgery was really, really, SUPER worth it. I teared up more than once reading this thinking about you not being able to pick up your babies right away and oh man, I'm so glad you guys made it through in relativley short order and got home and are all mended up. You are so strong for your kids, Arwen, I'm just in awe of you sometimes. Of course you do what you have to, but still. You do it with such grace, finding it in you to pray for others around you on a night your kids were also struggling.

WOW. You need a huge freaking medal for doing DOUBLE TODDLER SURGERY and surviving. Amazing! I'm so glad they both rebounded so quickly and that it seems to be helping already. I hope your days of cough-barfs are behind you :)

I am so glad you're able to give us all the details -- I didn't want to ask too many questions but I was very curious! One of my aunts is a PICU nurse (actually, the charge one) and my mom is an OR nurse so I do like knowing how things have gone. I'm excited that they will now get to breathe much more easily.

Oh wow, two simultaneous tonsillectomies? With toddlers? That is incredibly rough, even if they're sucking down 20 popsicles a day. We had Daniel's done when he was 5, also for sleep apnea, and that was hard enough to deal with -- the poor kid just wanted to feel better so much (and I'm also one of those parents who stresses out over the 1 in 100,000 chance of anesthesia complications or whatever it is) But it really makes a huge difference afterwards to their sleep quality, and -- while this probably isn't relevant to A&L yet -- it helps a lot with night training, since sleep apnea means a lot of body signal confusion and thus a lot of wetting the bed.

On a side note, Camilla is enormous! And they all look gorgeous and happily pain-free :).

I love how in every picture you identify which twin is which. It's like a glimpse inside your head, where you're always sorting them.
This story sounded completely traumatic, and I wish I could make you a cup of tea. Well weathered, dear.